Anybody on LDK 378 By Novartis?

stayalive
stayalive Member Posts: 24
in Lung Cancer #1
Hello,

My 21-yr old son was on crizontinib for 5 months and now he has developed resistance to the drug and his condition is now getting worst so the doctor is moving him to LDK378. I understand this is an extremely new drug with about 10 or less in trial. Does anybody have any thoughts on this drug? I could not find much info on the internet.

Also, what are the thoughts of going back to chemo vs getting on a trial drug? I'm just getting extremely worried that we are getting to the end of the road and there's really not much options for us out there.

Comments

  • aspirito
    aspirito Member Posts: 1
    #2
    My 24 year also became
    My 24 year also became crizotonib resistant after 10 months - tried STA 9090 but had terrible abdominal side effects so had to discontinue it. Went on LDK378 two weeks ago at 400mg and symptoms have improved significantly so we are very hopeful it is working - has a petscan in 2 weeks
  • stayalive
    stayalive Member Posts: 24
    #3
    aspirito said:

    My 24 year also became
    My 24 year also became crizotonib resistant after 10 months - tried STA 9090 but had terrible abdominal side effects so had to discontinue it. Went on LDK378 two weeks ago at 400mg and symptoms have improved significantly so we are very hopeful it is working - has a petscan in 2 weeks

    Thanks for sharing
    Thanks Aspirito for sharing. Do you have much info on LDK378? Is your son in the clinical trial? I assume the LDK378 side effects are similar to crizontinib? Good luck with the petscan - would appreciate if you can keep me posted on your son's progress. Will be keeping your son in our prayers.
  • Colorado52
    Colorado52 Member Posts: 1
    #4
    LDK
    Hi-I am about to start the LDK trial in about 5 weeks. I'm so gald to hear it is working for your son! It is the first positive news we have heard on the drug. How did his PET scan go? Has he had any side effects with the LDK? How long was he on Crizotinib? Hope the good news continues for him. Thanks in advance for responding.
  • stayalive
    stayalive Member Posts: 24
    #5
    Colorado52 said:

    LDK
    Hi-I am about to start the LDK trial in about 5 weeks. I'm so gald to hear it is working for your son! It is the first positive news we have heard on the drug. How did his PET scan go? Has he had any side effects with the LDK? How long was he on Crizotinib? Hope the good news continues for him. Thanks in advance for responding.

    LDK 378 for 2 Months
    My son has been on LDK 378 for 2 months and so far is doing better. We are continuing to pray & hope for the best. How are your's going?

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