Advice Needed

Fighting Irish
Fighting Irish Member Posts: 2
in Lymphoma (Hodgkin and Non-Hodgkin) #1
My brother has had a relapse of HL stage IV and will begin a clinical trial of LBH589 one week prior to starting ICE. Can anyone offer advice of how best to prepare, what to expect and questions to ask drs? Thank you so much in advance!

Comments

  • vinny59
    vinny59 Member Posts: 1,036 Member
    #2
    hello
    I not to familiar with this new treatment, but from what I heard it's used after a relapse from a stem cell transplant, has your brother had one? The best advise on preparing, would be like any other treatment, try to keep a positive outlook, listen to his doctors, and rest when he is tired. Not much help I know, but stay strong..... Vinny
  • diazr1
    diazr1 Member Posts: 101
    #3
    I am also on a relapse stage
    I am also on a relapse stage IV for HL but I am receiving SGN35 for mine..... First time I hear of LBH589. Maybe you can research the two and ask which is your best option
  • Fighting Irish
    Fighting Irish Member Posts: 2
    #4
    vinny59 said:

    hello
    I not to familiar with this new treatment, but from what I heard it's used after a relapse from a stem cell transplant, has your brother had one? The best advise on preparing, would be like any other treatment, try to keep a positive outlook, listen to his doctors, and rest when he is tired. Not much help I know, but stay strong..... Vinny

    Thanks Vinny
    No he has not
    Thanks Vinny

    No he has not had a relapse from a stem cell transplant just relapse of HL. He will do the clinical trial, ICE, BEAM and then have a transplant. I believe that is the correct order! he is receiving treatment at MD Anderson.

    Thank you again for the advice and please keep well!
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #5
    diazr1 said:

    I am also on a relapse stage
    I am also on a relapse stage IV for HL but I am receiving SGN35 for mine..... First time I hear of LBH589. Maybe you can research the two and ask which is your best option

    Hodgkins or Non-Hodgkins ??
    Are we talking about HL or NHL here. ?

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