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Alectinib and brain functions


Solar Lung

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Hello,

My name is Michael. I am 54 years old, non-smoker. I was diagnosed with stage 2B Lung Cancer/ALK+ May of 2021. I had the upper lube of my right lung removed in September of the same year. I started Alectinib 1200MG/day in June of 2021 and finished last September. I had some strange brain fog while on it, but since I have been off, the brain issues have persisted. My short term memory is shot, I get disorientated and have a crazy head pressure/inflamed feeling most of the time within my skull. I am not blaming the alectinib or anything thing else, just trying to figure out if anyone else has/is experiencing these symptoms or if there have been studies on how Alectinib may affect brain functions. 

I appreciate any insight or direction anyone shares. And believe me, I will pay it forward. 

I have been very fortunate this far. My lost few scans are saying I am clear. I hope everyone here will receive the same news soon. 

Thank you,

Michael 

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Hi Michael, sorry to hear you have brain fog symptoms but glad they caught your cancer early. What kind of scans did you have last? Did they include contrast brain MRI? That would be the gold standard imaging to check for brain issues.

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Hi Michael, 

I was diagnosed with ALK nearly five years ago now at Stage IV; have been on Alectinib for 52 months with clear scans.  The brain fog and memory issues are very familiar. They are a common reported side effect for many of us.   I have a few ideas depending on what's available at your center: 

1. Ask for a palliative care referral; it's a misperception that palliative care is for end of life.  Today palliative care teams are trained to assess and treat side effects.  Oncologists really only treat the cancer; not the side effects.   Sometimes a short course of Ritalin/Adderal might help.   

2. Some of the larger cancer centers have post treatment cognitive rehabilitation programs to reduce brain fog and improve memory.  That might be worth checking into. 

3. You might want to check into seeing a board certified physician in Integrative Medicine for Functional Medicine.  Here is an article on how to locate one: 

https://www.drweil.com/health-wellness/balanced-living/healthy-living/seeking-an-integrative-medicine-physician/  I had some pesky lingering side effects that the palliative care doc and the integrative care doc couldn't figure out.  So I persisted and found a functional MD who actually did finally get to the bottom of it all.   It's important to find a board certified MD as there are a lot of quacks out there.

4. Finally, you might want to consider acupuncture with a licensed Chinese medicine practitioner (not the kind you find at a chiropractor's office).   It's expensive but sometimes covered by insurance.  In my opinion, it's been pretty helpful. 

If you haven't already found the ALK Community, they have pages on Facebook and a website at www.alkpositive.org 

Hopefully some of this will be helpful for you to consider.  Don't give up... keep talking to your doctors. 

Michelle 

 

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Hi Michael, 

Welcome aboard. I'm an EGFR person myself, taking a different targeted therapy than you for almost a year. FWIW, my short term memory is full of holes. I hear this from a lot of folks taking the same med.  

I figure it's better than the alternative....

Karen

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