Hi Everyone
Figured I would give an update regarding my mother who was diagnosed in August 2022 with stage 5 NSCLC (Adenocarcinoma). Molecular testing revealed that mom has 2 uncommon mutations on exon 18 and exon 20. The specific mutations my mom has are S768l and G719S. She started Tagrisso 80mg at the time of diagnosis and has been stable since symptomatically as well as on her scans. All her bone mets disappeared on her scans and her primary tumor also shrunk in size but did not totally disappear.
Everything was going smooth until this past September when mom started to experience ongoing painless diarrhea for 2 weeks. She was taken to the hospital where a bunch of tests were run to rule out everything GI related (Except for a possible virus) and after everything coming back negative it was assumed the Diarrhea was a side effect of the Tagrisso. She was instructed to stop the Tagrisso for 2 weeks and to lower the dose from 80mg to 40mg which she remained on until now. Unfortunately mom suffered another major setback this week. She started complaining of more GI symptoms (stomach pain similar to what she experienced when first diagnosed in the summer of 2022) and more fatigue (More than usual) the past few weeks. Her CEA markers were also trending upwards in the last 3 months and she is due for her routine CT scans which her Onc said would give us a better idea of what's going on. Her symptoms became too bothersome to wait for the CT scan to get scheduled (insurance hold ups) and we took her to see her pulmonologist yesterday who ran an ultrasound and noted a large accumulation of fluid again (effusion). She is scheduled to have the fluid drained tomorrow and they will send it out for lab markers as well. Of course we were informed that based on the presence of the fluid it was highly likely that the cancer is progressing. How much progress is still unknown because we still have not gotten her in for the CT scan. He told me the question now becomes, did the disease progress because of the lower dose or because the Tagrisso has stopped working entirely (I.e. resistance). He did not know the answer to this question but he will be reaching out to our Oncologist to inform her of today's findings. Do you know what happens next? If it stopped working, what options do we have? Mom has substitution mutations on exon 18 and exon 20. Is chemo going to be inevitable? Mom is very frail, only weighing 90lbs and i am very fearful she would not tolerate the Chemo.
I was wondering,
1) is it common to see the tumor/disease progress after halving the dose of Tagrisso?
2) is the likelihood of the tumor/disease getting back under control high/good once you increase the dosage of Tagrisso again which is what I’m assuming will be suggested
Basically, is this a commonly seen scenario where the dose is lowered and the disease decides to progress but can be brought under control again later by increasing the dosage? Just worried about what the future may be holding and hoping there may be an easy fix to this. 15 months on Tagrisso (with the last 4 months only at half dosage) hopefully doesn’t mean it stopped working. Thanks for any insight or advice