Alecensa (Alectinib)-ALK NSCLC

[TeresaB]

I'm new to this site. I'm 60 and was diagnosed with ALK NSCLC metastatic on 6/18/2021. Like most, I never smoked or was not around second hand smoke.  I have always been in very good health and exercised regularly.  I had my left upper lung removed, done chemo and radiation.  Now, I'm on Alecensa (Alectinib) for the next 6-12 months. The doctor started me on 1/2 dose and is working my dosage up every 2 weeks until I reach full dosage.  I have high allergies to medications.  Can anyone share with me their experience with Alecensa?  My doctor has only treated around 20 patients that were ALK.  ALK is definitely rare.  Thank you for any input.

[Rower Michelle]

Hi Teresa,

I was diagnosed with ALK in September, 2018 and have been taking Alectinib since October,2018.   It sounds like you were diagnosed at Stage III, which is indeed very rare.    If your doctor has 20 patients, that’s practically “expert”, my doc has what’s considered a large ALK practice with four patients.   Like you I was very fit, no one was looking for a lung cancer diagnosis as a never smoker.  
 

You’ve indicated the plan is to be on Alectinib for a couple of years, this is worth a second opinion with one of the ALK experts, you can find at  https://www.alkpositive.org   Most people continue on Alectinib as part of a maintenance protocol.  
 

I have found the drug to be pretty well tolerated, with one dose reduction due to elevated liver enzymes which is very common.  Dosing for this drug is one size fits all initially and many people end up on a maintenance dose below the manufacturers recommended dose.    Don’t worry about how high the dose gets vs it’s effectiveness.  It is very important to take this medication with a high calorie meal and a fat.  Nuts, seeds, avocados typically work well.  My primary side effects are weight gain and fatigue.  The weight gain didn’t happen until I was on the drug for several months.  

Here is a list of potential side effects:

https://static1.squarespace.com/static/5b6cc61596d4557796b187fe/t/5c50df3cc74c507564e98e64/1548803900278/ALK-Positive_Medication-Help_Alectinib.pdf

It is also important to understand which AlK variant was identified in the biopsy.  If there was comprehensive biomarker testing done by Foundation Medicine your doctor should be able to find out.  Variants can serve as a potential predictor for length of therapy/ monitoring protocol.  The variants are listed numerically: Variant 1, Variant 2 & Variant 3. I had something very rare that didn’t fall into any of those categories.  Dr Ross Camidge  at the Colorado University interpreted the results for us. 
 

If you’re on Facebook there is a vibrant ALK Community- AlK Positive, ALKies Unlimited & ALK Fusion.    On their website you will find a monthly calendar of activities.  I don’t do FB, and find there are ample opportunities to connect with the other ALKs.  
 

There are many long term ALK survivors out there- last week I met one during a Zoom meet up who is a 10 year survivor.  
 

Let us know if you have any questions, we’ll do our best.

Michelle

[TeresaB]

Thanks for the information.  I'm actually stage 4.  All the cancer sites have been removed from my body.  At the moment, I've been deemed disease free.  I will check on the ALK variant.  The doctor only wants me to be on Alectinib for no more than 12 months.  My cancer was accidentally found.  I will definitely look into the other sites you have mentioned and seek out other ALK survivors.  

[Karen_L]

Greetings, Teresa,

I'm so glad you have a doctor who has knowledge of this mutation.

12 months is a long time away-- who knows what new research will appear. And, who knows what you will learn that will help inform his practice. 

Welcome!

Karen