Update: LMD and treatment at MD Anderson
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Update: LMD and treatment at MD Anderson

› Forums › General Melanoma Community › Update: LMD and treatment at MD Anderson

  • Post
    • February 27, 2014 at 9:55 pm
    joy_
    Participant

    I don't know if anyone remembers my previous posts about my husband's leptomeningeal disease, but I found searching this forum so beneficial when looking for treatment options that I want to continue to share our experience in case it can help someone else one day.

    We are now at MDA and soon he will have an ommaya port placed for IC IL-2.  Hopefully he will tolerate it well and he'll be in the 30% that it helps.

    Also they are starting him on dabrafenib.  For other disease in body.  And the thing we are excited about is that they will remove a 2 tumors for an upcoming TILs trial.

    They also mentioned that it is unknown whether dabrafenib crosses blood brain barrier but it is thought possibly.  They are going to possibly study my husband's CSF since he will have ommaya and maybe find this out!

    This is a tough treatment and scary road but we always remain hopeful! 

Viewing 8 reply threads
  • Replies
      • February 28, 2014 at 11:07 am
      Fen
      Participant

      Wow – sounds like lots of new treatments.  Bless you for posting – it really is a godsend to be able to find so much information quickly and coveniently.   Please post updates as you feel like it.  Praying the treatments are effective.

      Fen

      • February 28, 2014 at 11:07 am
      Fen
      Participant

      Wow – sounds like lots of new treatments.  Bless you for posting – it really is a godsend to be able to find so much information quickly and coveniently.   Please post updates as you feel like it.  Praying the treatments are effective.

      Fen

      • February 28, 2014 at 11:07 am
      Fen
      Participant

      Wow – sounds like lots of new treatments.  Bless you for posting – it really is a godsend to be able to find so much information quickly and coveniently.   Please post updates as you feel like it.  Praying the treatments are effective.

      Fen

      • March 1, 2014 at 5:39 am
      Socks
      Participant

      Fingers crossed for you and your husband! I hope MDA is able to help him as much as they helped my mom! 🙂

      • March 1, 2014 at 5:39 am
      Socks
      Participant

      Fingers crossed for you and your husband! I hope MDA is able to help him as much as they helped my mom! 🙂

      • March 1, 2014 at 5:39 am
      Socks
      Participant

      Fingers crossed for you and your husband! I hope MDA is able to help him as much as they helped my mom! 🙂

      • March 5, 2014 at 7:48 am
      JerryfromFauq
      Participant

      I knkow several people that Dr Pappa's treatment was extremely beneficial to.  I am very glad to see that they are attack on all fronts and not just one front at a time.  Thank you for keeping us updated.  Amy's family loves seeing her information still being usedd to help others now.

      • March 5, 2014 at 7:48 am
      JerryfromFauq
      Participant

      I knkow several people that Dr Pappa's treatment was extremely beneficial to.  I am very glad to see that they are attack on all fronts and not just one front at a time.  Thank you for keeping us updated.  Amy's family loves seeing her information still being usedd to help others now.

        • March 23, 2014 at 2:42 am
        joy_
        Participant

        Jerry,

        Amy's name came up among a few of us melanoma fighters & caregivers who met this past week at MDA!  I do sincerely hope that her family sees this and knows that she is still helping others!

        My husband is in his 2nd week of Dr. Papa's special treatment for LMD.  He has lots if other mel in body and a couple of spots in brain to deal with, but we are fighting it with everything we've got!

        • March 23, 2014 at 2:42 am
        joy_
        Participant

        Jerry,

        Amy's name came up among a few of us melanoma fighters & caregivers who met this past week at MDA!  I do sincerely hope that her family sees this and knows that she is still helping others!

        My husband is in his 2nd week of Dr. Papa's special treatment for LMD.  He has lots if other mel in body and a couple of spots in brain to deal with, but we are fighting it with everything we've got!

        • March 23, 2014 at 2:42 am
        joy_
        Participant

        Jerry,

        Amy's name came up among a few of us melanoma fighters & caregivers who met this past week at MDA!  I do sincerely hope that her family sees this and knows that she is still helping others!

        My husband is in his 2nd week of Dr. Papa's special treatment for LMD.  He has lots if other mel in body and a couple of spots in brain to deal with, but we are fighting it with everything we've got!

        • November 19, 2015 at 6:40 pm
        RUDYPEREZSAMAN
        Participant

        Hello All

        My wife has LMD onthe brain and the spine.

        She already had WBR and spine radiation.

        Shes on Tafinlar and Mekinist, plus KEYTRUDA every 3 weeks.

        We are treated at MD ANDERSON, at this time looks that the medicine is notworking as we want.

        Any suggestion of doctors or hospitals that should we visit or try.

        Thanks a lot!!!

        Rudy.

        • November 19, 2015 at 6:40 pm
        RUDYPEREZSAMAN
        Participant

        Hello All

        My wife has LMD onthe brain and the spine.

        She already had WBR and spine radiation.

        Shes on Tafinlar and Mekinist, plus KEYTRUDA every 3 weeks.

        We are treated at MD ANDERSON, at this time looks that the medicine is notworking as we want.

        Any suggestion of doctors or hospitals that should we visit or try.

        Thanks a lot!!!

        Rudy.

        • November 19, 2015 at 6:40 pm
        RUDYPEREZSAMAN
        Participant

        Hello All

        My wife has LMD onthe brain and the spine.

        She already had WBR and spine radiation.

        Shes on Tafinlar and Mekinist, plus KEYTRUDA every 3 weeks.

        We are treated at MD ANDERSON, at this time looks that the medicine is notworking as we want.

        Any suggestion of doctors or hospitals that should we visit or try.

        Thanks a lot!!!

        Rudy.

        • November 19, 2015 at 6:40 pm
        RUDYPEREZSAMAN
        Participant

        Hello All

        My wife has LMD onthe brain and the spine.

        She already had WBR and spine radiation.

        Shes on Tafinlar and Mekinist, plus KEYTRUDA every 3 weeks.

        We are treated at MD ANDERSON, at this time looks that the medicine is notworking as we want.

        Any suggestion of doctors or hospitals that should we visit or try.

        Thanks a lot!!!

        Rudy.

        • November 19, 2015 at 6:40 pm
        RUDYPEREZSAMAN
        Participant

        Hello All

        My wife has LMD onthe brain and the spine.

        She already had WBR and spine radiation.

        Shes on Tafinlar and Mekinist, plus KEYTRUDA every 3 weeks.

        We are treated at MD ANDERSON, at this time looks that the medicine is notworking as we want.

        Any suggestion of doctors or hospitals that should we visit or try.

        Thanks a lot!!!

        Rudy.

        • November 19, 2015 at 6:40 pm
        RUDYPEREZSAMAN
        Participant

        Hello All

        My wife has LMD onthe brain and the spine.

        She already had WBR and spine radiation.

        Shes on Tafinlar and Mekinist, plus KEYTRUDA every 3 weeks.

        We are treated at MD ANDERSON, at this time looks that the medicine is notworking as we want.

        Any suggestion of doctors or hospitals that should we visit or try.

        Thanks a lot!!!

        Rudy.

      • March 5, 2014 at 7:48 am
      JerryfromFauq
      Participant

      I knkow several people that Dr Pappa's treatment was extremely beneficial to.  I am very glad to see that they are attack on all fronts and not just one front at a time.  Thank you for keeping us updated.  Amy's family loves seeing her information still being usedd to help others now.

Viewing 8 reply threads
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