Anaplastic Astrocytoma Grade 3 Brain Stem

My husband has an AA3 in not an ideal location(if there is one). I waa looking for some positive survival stories. A lot of the posts on these discussion boards go on for a long time, but we never hear how everyone is doing. I guess I am looking for hope, but I am also looking to manage my expectations. I have a 5, 8 and 11 year old to take care of and I need to be positive bit look at worst case scenarios. My husband is healthy and happy now and half way through 12 months temodar. Thanks

Comments

  • j_mate1
    j_mate1 Member Posts: 1
    Aloha Rofffamily

    Ok, so this is my first time on here, and I really don't know what to expect or how to start. But, I did want to see how and if there were anyone else out there that had gone through what I went through, and continue to go through today, and share my story. I think my story is a positive one, so hopefully I can help anyone, especially you Rofffamily. I am turning 40 this year and had a brain tumor surgery done jan. 1, 1997. Since my tumor was not in an 'ideal' location, the brain stem, during the surgery 3 nerves were cut. One to the eye-lid, to the corner of the nose, and corner of the lip. So, the right side of my face has no nerves in them all this time. So, yes, you can imagine, the smile isn't the greatest... After the surgery when I was 21-22, I got married to my girlfriend. We have had 6 beautiful children. Youngest is 5 and oldest is 15. God has given me a second chance and that is all that I ask for....now. Anything else is just icing on the cake. Even a half smile is better than a no smile....My wife is the best and she knows that the time that we have had on this earth, is but a second in comparison to the life that we will have after we pass on. Smile and be happy and enjoy this life....what ever it gives us...We are all a family now with having cancer or tumors or whatevers....Stay positive. 

  • Rofffamily
    Rofffamily Member Posts: 3
    j_mate1 said:

    Aloha Rofffamily

    Ok, so this is my first time on here, and I really don't know what to expect or how to start. But, I did want to see how and if there were anyone else out there that had gone through what I went through, and continue to go through today, and share my story. I think my story is a positive one, so hopefully I can help anyone, especially you Rofffamily. I am turning 40 this year and had a brain tumor surgery done jan. 1, 1997. Since my tumor was not in an 'ideal' location, the brain stem, during the surgery 3 nerves were cut. One to the eye-lid, to the corner of the nose, and corner of the lip. So, the right side of my face has no nerves in them all this time. So, yes, you can imagine, the smile isn't the greatest... After the surgery when I was 21-22, I got married to my girlfriend. We have had 6 beautiful children. Youngest is 5 and oldest is 15. God has given me a second chance and that is all that I ask for....now. Anything else is just icing on the cake. Even a half smile is better than a no smile....My wife is the best and she knows that the time that we have had on this earth, is but a second in comparison to the life that we will have after we pass on. Smile and be happy and enjoy this life....what ever it gives us...We are all a family now with having cancer or tumors or whatevers....Stay positive. 

    Good on you! 6 children and a

    Good on you! 6 children and a beautiful wife are a lot of reasons to fight and be healthy. The smile on the inside is the most important smile!

    My husband has no deficits from the surgery, but the tumour is causing issues in that he has balance problems and one eye doesn't blink. He makes the most of a bad situation and we still find ourselves saying we are lucky!

    xx

  • wanye
    wanye Member Posts: 11
    Still fighting 2.5 years

    Hi Rofffamily

     

    My sister had her diagnosis 2.5 years ago we are still holding on in faith. She has been off avastin for 6months but is getting back on it tomorrow. Real bummer, before she stopped it her mets had disappeared, leaving foci of inactive tumor. she has had two surgeries on year apart and three recurrences. We have great faith and hope she'll beat this awful gbm her doctors expected her to live a few months, even with this latest recurrence we continue to believe, we've been on the verge of losing her and so for us our faith has been strengthend to know even when the doctors give up miracles still happen. All the best walking this journey with your husband may you find hope in some of the stories here on csn as I have amidst the sadness.

    p.s our greatest miracle was when the meningeal spread disappeared from her mri, I still feel dumbfounded whne I remember the news. Keep believing, I must say I find great comfort in my faith in God