Hi there
I live in the UK, am Alk positive receiving crizotinib as my first line treatment sine February 2013, I had gamma knife for 3 small mets in March this year, have had one good brain MRI since then showing reduction in the mets and am due another screening brain MRI later this week. I saw Dr Shaw comment on one of the forum videos that she was seeing leptomeningeal carcinomatosis in Crizotinib patients, I think she suggested somewhat more often than she would have expected. I am worried that the risk of this not very treatable metastasis developing on crizotinib suggests one should move on to LDK 378 rather than string out Crizotinib whilst managing visible brain mets with SRS. What do the doctors think about the risk over time on crizotinib of leptomeningeal carcinomatosis - hope I've spelt it correctly! Thank you, Alicia.
Reply # - November 3, 2014, 02:22 PM
Hello Alicia,
Hello Alicia,
I hope you are feeling well on crizotinib and congratulations on it's longevity. I have asked one of our faculty who studies this drug to comment.
I hope this is never a problem,
Janine
Reply # - November 3, 2014, 02:52 PM
Dear Alicia,
Dear Alicia,
I hope that leptomeningeal does not occur - it is not a certainty that it will. I think LDK378 (ceritinib) does have better penetration into the brain than crizotinib, but we don't have any data yet on whether LDK378 is good at preventing or delaying leptomeningeal disease. The most complete data published so far is from alectinib which showed good responses in the CNS that were quite durable. I would say that your best strategy is relatively frequent brain MR imaging (typically we do every 3 months or sooner if any new neurologic symptoms occur). If you are tolerating crizotinib well right now I would consider staying on until there is evidence that tumor has gotten worse in the brain (in which case it may be reasonable to perform focal radiation if only one or two spots rather than switching from crizotinib) or more widespread worsening in the lungs or other organs. It seems like this drug is working well for you overall and hopefully it will continue to do so for a while.
Reply # - November 4, 2014, 12:35 AM
Thank you Janine and Dr
Thank you Janine and Dr Doebele. Alicia