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Brain and bone mets

Forums General Melanoma Community Brain and bone mets

  • Post
    Linda J
    Participant
      I just was about to start th braf/mek combo trial this week when the routine MRI showed 5 small brain mets-the biggest is 1cm (is that still small)? The pet scan also showed activity in my bones, spine and nodes, along with the 20 subqs that i have been getting since mid December. The plan right now is WBR this weekend, then chemo until the braf trial that targets the brain as well opens up in Canada in six weeks.
      Is it a good sign that the Mel isn’t in any organs other than the brain? Are bone mets bad? I feel like the Mel went totally crazy within the past few months as I had a clear pet scan in august. Am I too far gone? Can I still slow it down and beat it?? I am 31 and have a 2yr old miracle son. I told my doctors that I am going to be one of those miracle patients that they tell their other patients about.
      I would really really love to hear some success stories from those of you who have had brain and bone mets. I need some reassurance that I can still beat this despite how aggressive it seems to have become.

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        LynnLuc
        Participant

          Hi! Hoping you do well with your treatments!

          Having melanoma anywhere is not a good thing. We all hope it can be taken out and never to return. However- it's a only a hope . The bottom line is no doctor will tell us we "beat" it. I am NED and yet I know it can come back anyday…The best of oncologists will not give us the reassurance that we can beat it…some people respond to certain treatments while others don't. I don't believe it's hopeless for you or for anyone. Hold strong, have faith…the longer we stay alive the better our chances that a "cure" will come.

          I was told I had 6- 9 months but I didn't accept it. It's been nearly 2 years since I was diagnosed as stage 4…and I am still here and I have no evidence of disease.

          Praying for blessings for you,

          Lynn

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          LynnLuc
          Participant

            Hi! Hoping you do well with your treatments!

            Having melanoma anywhere is not a good thing. We all hope it can be taken out and never to return. However- it's a only a hope . The bottom line is no doctor will tell us we "beat" it. I am NED and yet I know it can come back anyday…The best of oncologists will not give us the reassurance that we can beat it…some people respond to certain treatments while others don't. I don't believe it's hopeless for you or for anyone. Hold strong, have faith…the longer we stay alive the better our chances that a "cure" will come.

            I was told I had 6- 9 months but I didn't accept it. It's been nearly 2 years since I was diagnosed as stage 4…and I am still here and I have no evidence of disease.

            Praying for blessings for you,

            Lynn

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            Carmon in NM
            Participant

              I would say that 1 cm is small! I had two brain mets, one that was 6 ml and one that was 2×3 cm which was at the very edge of what could be treated with gamma knife. The good news for me was that after a craniotomay for the large met and gamma knife for both, I have now gone six months with no new brain mets and the two old ones are considered to be scar tissue.

              So lots of hope for you with the brain mets!

              I have not had experience with bone mets so I don't have any information to share there but with so many more treatment options available now, there is always hope to find something that will work for you. My good thoughts are prayers for you. Carmon

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              Carmon in NM
              Participant

                I would say that 1 cm is small! I had two brain mets, one that was 6 ml and one that was 2×3 cm which was at the very edge of what could be treated with gamma knife. The good news for me was that after a craniotomay for the large met and gamma knife for both, I have now gone six months with no new brain mets and the two old ones are considered to be scar tissue.

                So lots of hope for you with the brain mets!

                I have not had experience with bone mets so I don't have any information to share there but with so many more treatment options available now, there is always hope to find something that will work for you. My good thoughts are prayers for you. Carmon

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