Diagnosed end May 2019. NSCL with EGFR Exon-21 deletion; main tumour in right lung 3.5cm but with ground glass opacities in both lungs. Staged as 2A at the time. Started Afatinib 40mg in July but didn't last very long on that because of side effects (mouth and tongue ulcers etc.) dropped down to 30mg and then to 20mg which I have remained on. I had a major pleural effusion in November which led to 3 weeks in hospital as I developed an infection and then significant loculation in the lung which meant that thoracentesis drainage was not straightforward. The effusion was diagnosed as containing cancer cells unfortunately which probably means I am stage 4 now but I haven't been told that. I left hospital with a collapsed lung and rubbish lung function. Early in the new year I had a VATS procedure to clear out the loculations and unstick the lung (not the medical term - I think it is called decortication) so that it could reinflate, which it did to some extent but not completely. It did help significantly with my breathing and it was deemed a success. That was in January and I had a CT scan in mid-January of thorax, abdomen and pelvis. This was deemed ok - my earlier scan had indicated some shrinkage of the main tumour - and I stayed on the Afatinib. Since the Covid crisis I have had tele consultations with the oncologist and I have had one set of bloods done that was ok. So I haven't had a scan since mid Jan and I have a fresh scan next week.
In the last few weeks my breathing has got more difficult and I am getting some pain in my right lung (back and side) which feels like pleural pain. My gut instinct is that there is some fluid build up but the CT scan will confirm this and what is going on. I am aware that Afatinib will stop working after a period but I have had various answers on how long that takes on average. My fear is that it has stopped working but what has been folks' experience of Afatinib for them? If it does stop working I am aware that if you have a particular mutation you can go onto Tagrisso, but only if you have that mutation. I don't think the options are that great if you can't.
Would be glad to hear what other people have found and any observations.
Thanks a lot.
David
