Hi

I have just completed a course of 4 chemotherapy cycles for recurrent, incurable non small cell lung cancer. The drug infusion consisted of carboplatin, pemetrexed and an immunotherapy drug, pembrolizumab.

The biopsy taken before treatment showed that I have a rare mutaton - EGFR exon 20. This mutant doesn't respond to the targeted treatment that other EGFR cancers do. As my chemo treatment has finished now, I had a scan on 28 May to see how my tumour has responded to treatment. My oncologist is going to phone me on Monday to discuss a way forward based on the results of the scan. He mentioned a trial drug for my mutant called Tak-788, otherwise known as Mobocertinib. I think he will offer me this if the tumour has grown. If it's stable I think he will keep me on a reduced chemotherapy treatment of pemetrexed for as long as it's helpful. 

The reason I'm posting here is to see if anyone has taken this trial drug and what their experience has been. The side effects seem quite harsh, but maybe they can be managed with other treatments. 

If my tumour is stable, that's good news for me as chemo hasn't been too punishing and I'd be bappy to carry on. If my tumour has grown I am pretty sure that the oncologist will discontinue all chemotherapy as the cocktail he has given me is the best they have. So in my mind I have a choice between the trial drug and no anti-cancer treatment. That is to say, I will move on to palliative care. I am ok about that - I'm just at that difficult stage of trying to decide what to do.