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5 years of EGFR NSCLC and counting


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Journey sharing post.

My 70+ year old asian mother was diagnosed with lung cancer in 2016 after coughing out blood. Initially detected tumor in one side of the lung.  Was given some options, radiotherapy or targeted therapy (Iressa).  We had hoped to remove the tumor, so we chose radiotherapy.  It successfully removed the tumor, but after a few months, we detected the tumor in the other lung.  So we started on Iressa.  Iressa managed to control the tumor for many years, up till June 2020 when my mom started having very bad vertigo and vomiting, and progressively became very weak, had tremors, motor function and balance badly affected, brain fog etc. 

Many sessions with ENTs and neurologists, but they could not identify the cause.  Steroids helped the symptoms significantly.  We did a brain MRI, found a tumor there (cant remember the size, maybe around 5 cm).  Biopsy showed that this was the tumor from the lung.  Surgery was done to remove the tumor and things improved.  However, after a while, the vertigo and vomiting returned.  Another MRI showed some smaller tumors grew to 1cm, and did radiosurgery to remove them.  The vomiting continued after the radiosurgery.  The many doctors were trying to rule out other possible reasons ie bacterial/viral infection etc, but nothing conclusive was found.  Oncologist suggested that there may still be very small tumor cells in the brain lining that cannot be detected by MRI and these tumor cells may be blocking the transfer of fluid between the brain lining, causing all sorts of problems.  He suggested to change the Iressa prescription to Tagrisso as Iressa cannot cross the brain-blood barrier while Tagrisso has some ability to do so.  We started with double dose (80mg x 2) of Tagrisso, and slowly my mother got better.  She's still not her complete self, she gets tired much faster, has infrequent dizziness and vomiting, but at least she's functional now.  We have reduced the Tagrisso dosage to 1.5 tablets daily, instead of 2 tablets, no difference noticed from the change. 

So for now, my mother is functional and does not have much of the previous symptoms anymore.  She has been taking Tagrisso for 10 months now.  The cost of Tagrisso is a burden but I will try to make it work.  My country, Malaysia, has not authorized the use of the generic Osimertinib, and any attempts to order them online will result in warnings and potentially fines and imprisonment. 

I welcome questions or comments or insights.  Note that my memory of this 5 year journey might be inaccurate and my understanding of the doctors' explanations may also not be perfect. 

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Thanks for sharing your mother's journey here.  There is always hope and know that you have the support, good thoughts and prayers of everyone here.  Please keep us updated.


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