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Mother diagnosed stage 4 with ALK mutation


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Welcome to our forum and I'm sorry to hear about your Mom.  There are others here who have experience with mutations and I'm sure you'll be hearing from them soon.  In the meantime we do have a forum dedicated to "ALK Mutations" and it can be found here.  Good luck to you and your Mom and you'll be hearing from others soon.


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Hi there,   Want to drop a brief welcome to let you know I’ve been taking Alectinib for a little more than three years, now No Evidence of Disease.   The biggest challenge is weight gain and chronic fatigue.   The most important thing to understand with Alectinib is that dose changes are normal, lower doses does not mean less effective.   It must be taken with a high fat meal- very important for absorption, managing constipation or nausea.   Avocados, nuts, and seeds work best.   Remember your Mom will be playing a long game, it’s a marathon not a sprint.  

There are two ALK Facebook pages, ALK Positive and ALKies Unlimited.    I’d also recommend looking at the website: www.alkpositive.org for information as well as the monthly activity calendar.   

Hopefully your Mom will respond quickly.  My cough resolved immediately after just one dose.  I did have one dose reduction due to elevated liver enzymes.   So far so good.   

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