• PennieEckard's Avatar

    PennieEckard wrote on stage5guy's wall

    Hello stage5guy. It has been a while since you have posted, how are you doing? We are concerned....

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    • stage5guy's Avatar

      I am good! My kids are driving me crazy for the summer but I continue to be well on Zykadia after 22 months and a little stereotactic brain touch ups. I am grateful to be alive and having o good life. Whats up with you?

      4 months ago
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    Question: Anyone ALK+

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    stage5guy shared an experience

    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!

    • robsterstu's Avatar

      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).

      almost 2 years ago
    • flowerpurple's Avatar

      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 1 year ago
    • Gaz's Avatar

      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.

      about 1 year ago
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    Question: Out of it?

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