Lung cancer EGFR exon 20 - being offered trial drug TAK-788

First off, I have to say you should follow the advice of your oncologist way before you pay any attention from the internet, message boards, Dr Google, me, etc. Also, I have no personal experience with the drug being proposed for you and no medical expertise other than what comes with surviving NSCLC for more than 4 years (so far.)

I'm on Keytruda (pembrolizumab) for NSCLC. That also comes with a raft-full of side effects. The thing is, everyone is different and the side effects we experience will vary from one person to the next. The drug companies have to list every side effect because they don't want to get sued - that doesn't necessarily mean that everyone gets all of them.

If I check out what PubMed.gov have to say about TAK-788 clinical trials, and what Takeda themselves have to say about it (I'm really picky when it comes to consulting Dr Google), you would be most likely to get diarrhoea and after that better than a 50-50 chance of not getting much else. I'd take those odds even if I wasn't facing the alternative option.

Since starting treatment I've changed a lot in my life. Toiletries, diet, exercise, pretty much everything I could think of in a set of test-and-see experiments to reduce my side effects. It's taken a long time, and I've been lucky enough to have had that time, but I'm at a place now where I can tolerate treatment easily. You don't have to be entirely passive with your treatment.

Kind regards,
Steve

Hi my husband is starting a trial on 10th June. This will be along side his immunotherapy...... Not instead of..... The bonus is he will be seen weekly for 10 weeks and scanned every 3 weeks..... Good luck with your results. My husbands were better than we had ever expected. 

That's fantastic news! Thanks for replying. I know that we are all different, but just to hear of a fellow patient with the same type of illness to me makes me feel part of a community. The frequent check ups that your husband is receiving also make me feel more inclined to participate in the trial.

Very best wishes regarding your husband's treatment, Bluette

Thanks Steve

All of what you say is true. I will just see what the results of the scan are tomorrow, ask my prepared questions and take it from there.

Thanks for taking the time to respond to me. Kind regards, Bluette

Hi,

I'm new here. How are you, how is it going, is treatment working? 

I was diagnosed with EGFR Exon20 insertion mutation stage 4 in Aug -22, with cancer in July. It was hidden by a slipped disc, so I was on painkillers that hid the cancer. That's life. I couldn't join a trial due to metastases in my pelvis that caused a fracture shortly after the diagnosis. I've had radiation to my pelvis, and recently to one in my brain. I've had four cycles of chemo, getting another 4 starting next week. I plan on beating my estimated time while travelling and spending time having fun with loved ones. Painfree, on good meds, no problems from the lungs. It's hard to find anyone with a similar diagnosis, though mine is a bit far gone. 

All the best, sending extra strength! Regards to all.