GBM IV with new growth at 15 months

htmama
htmama Member Posts: 6
in Brain Cancer #1
Hello
My dad was diagnosed in Dec. 2009 and followed what seems to be the standard protocol; surgery, radiation and temodar.
Things had been going well until this week. His MRI shows signs of new growth.

So I am wondering what this means. The doc's just keep telling us that the original diagnosis still remains (12- 18 months on average) and we are to continue temodar until the next MRI in 3 months.

I don't know much but this seems bad to me. So I was wondering if what other people have experienced. Yes I know everyone is different. And I am surprised at the lack of information I can get too, particularly concerning new growth.

Comments

  • Beckymarie
    Beckymarie Member Posts: 357
    #2
    New growth
    I too found it was very hard to get information on this tumor. Many times I went on this board and asked questions but did not receive information. I now think it is because it is a very difficult subject. I can only speak to what we experienced with my husband. We too were told approx. 12 months. The radiation and temador did not work for him so he was put on avastin which did shrink the tumor for awhile. My understanding of the GBM is like a weed that you can attack at it's original site but there is a very aggressive root system that can cause the tumor to pop up in another area of the brain. That is what happened to my husband. His last MRI showed new growth. We were told of various trials that could buy him a couple of months but at that point he had lost use of his right side and his speech was deteriorating and we made the decision to take him home and call hospice, he passed 6 weeks later. He lived 15 months from the time of diagnosis. If you read other postings on this board you will see people who are living out several years with this tumor. I wish your family all the best fighting this horrible disease and hope you can find peace with whatever the outcome will be.
  • htmama
    htmama Member Posts: 6
    #3
    Beckymarie said:

    New growth
    I too found it was very hard to get information on this tumor. Many times I went on this board and asked questions but did not receive information. I now think it is because it is a very difficult subject. I can only speak to what we experienced with my husband. We too were told approx. 12 months. The radiation and temador did not work for him so he was put on avastin which did shrink the tumor for awhile. My understanding of the GBM is like a weed that you can attack at it's original site but there is a very aggressive root system that can cause the tumor to pop up in another area of the brain. That is what happened to my husband. His last MRI showed new growth. We were told of various trials that could buy him a couple of months but at that point he had lost use of his right side and his speech was deteriorating and we made the decision to take him home and call hospice, he passed 6 weeks later. He lived 15 months from the time of diagnosis. If you read other postings on this board you will see people who are living out several years with this tumor. I wish your family all the best fighting this horrible disease and hope you can find peace with whatever the outcome will be.

    Thanks
    Thanks for you sharing your story.

    It is a very difficult subject not to mention emotional. I hope that you and your family have found some peace.

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