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    Question: Anyone ALK+

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    Drug or Chemo Therapy (Targeted therapy): I lasted 31 months on Xalkori and I have now been on Zykadia (LDK) for 3 months. It looks like it is working, even on my brain mets. It is crossing the blood brain barrier. I am excited but cautious. This is a little harder to manage the side effects but I am grateful for th opportunity this new drug is providing. It is a 2nd generation ALK mutation blocker. Here we go!

    3 Comments
    • robsterstu's Avatar
      robsterstu

      So excited to hear the new drug is working for you! I have EFGR mutation, so they use a targeted drug for me as well. My doctor (researcher as well) says they are really finding out much more about the gene mutations and its one of the most heavily researched parts of lung cancer treatments right now! Good luck and keep posting...especially about how the drug is affecting you (good and bad).

      over 2 years ago
    • flowerpurple's Avatar
      flowerpurple

      Hi stage5guy:
      I was just diagnosed one month ago and I just started on Xalkori. Can I ask if yours is alk+? and that's why you were on the medicine? 31 months is a long time. I am encouraged. I want to see my youngest child to be older! He is 4 now~ Happy thoughts with regard to new medicine for you!

      over 2 years ago
    • Gaz's Avatar
      Gaz

      Hi, I have been on Xalkori for almost 20 months now with great effect. Side effects minimal (some vision ghosting in bad light), ALK mutation was my trigger for access. Australian access to drugs is at times unsupported by government funds so can be very expensive without compassionate release from the drug company (for which I am very grateful). I am not sure about what to expect with the next stage but have been told that the brain is most vulnerable from here.
      I am interested in feedback on that & anything else that people have experienced.

      almost 2 years ago
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    Question: Out of it?

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    stage5guy wrote on VLCB's wall

    Have you gone to the regional cancer center in Atlanta for consultation. Get a Thoracic oncologist to review your options with you! 2nd opinion! I understand if you are too tired and sick to go on your own, but get someone to pack you up and take you. There must be a big university teaching hospital there, with a good cancer center. Get to the specialists to have a chance to stay alive! Sometimes you have to save yourself in the medical world. There are many of us out here hoping for the best for you. We all care about each other. We care about you...