I just wondered how long you can stay on it and if it stops working what the options might be. Also has it relieved your symptoms and can you return to normal activities? Any info would be helpful.
I was told that I would take it for the rest of my life or for as long as it continues to work. I asked what happens then and was told it would be chemotherapy unless new drugs were passed and that there were 2 other in the pipeline but not passed as yet so I'm hoping they will be surfacing soon just in case this stops working for me. I'm on the 3rd generation of this medication so it has been tweaked already a couple of times but I've only had this one. It comes in 80mg which is the standard dose. It is said to be a well tolerated tablet however my body didn't cope well with it and my dosage had to be lowered to 40mg which was scary just being on a half dose. However this drug works equally well at 40mg so much so that my stage 4 lung cancer is currently dormant everywhere and my side effects are now minimal and easier to manage. I asked how long the tablet works for and was told that currently there has been a case of dormant cancer for 5 years which was a year ago so it maybe 6 years now and it continues to work. I also asked what the average time it works for and was informed 18 months. I have been on this for 15 months now and it continues to work but I'm due to get my latest scan results in a weeks time so currently keeping my fingers crossed it will be good news again. My only symptoms were a cough and a type of hiccup. The latter became apparent only once diagnosed. Both appear to be dormant also. Ask me anything you would like and I will respond to whatever you wish to know. I have just returned from Lapland with my family.
Thank you, that’s reassuring. Glad to hear you managed a lovely holiday with your family and good luck with your scan. I hope the treatment carries on working for you. I’ll look out for your posts.
Thanks. We have had quite a few holidays since I was diagnosed. Taking away my 5 year old grandson in the school holidays as much as we can while I'm well enough to do so. Lapland came a year earlier for us than we planned as I was worried in case I wasn't well enough to do it in winter 2026. I used to plan so far ahead of time but now I plan in 3 monthly cycles. Our main change in life is that we live in the moment more now. Hope all goes well with your Osimertinib tablets. Anytime you need an ear I will be listening for you.
