New ROS1 lung cancer diagnosis

Good morning. Yes, I've heard of this. My husband has this cancer. He was told he was special as it quite rare. Your not alone. He started on a tablet form of chemo, which he took for six months. Unfortunately for him it didn't quite work as well as was expected. He is now on an different type. I'm not quite sure of all the names they use. So pleased bare with me.

Morning White Eagle. Excuse me if this is repeat, thought I had responded earlier. Anyway I am ROS1. Don’t really meet criteria of mainly Asian females, late 50/60’s, non smoker or light pack year history. I stopped smoking 32 am 72 now. Unfortunately I have suffered with swollen ankles for years. Of course swelling is a possible side effect and of course that’s the one I got so Onc Team took me off. It is nowhere near as bad as chemo (Cisplatin).  Nothing ventured nothing gained. Wish you well.

Thanks for the contact.  It seems only 1-2% of NSLC are ROS1.  

Thanks for the contact and also wishing you well.  

I've just spoken to my husband and if you have any questions please ask him

Yes. As a non smoker at 58, the bottom fell out of mine and my husband's world. This medication was one tablet twice a day. It was the one you said. Everyone's side effects are different. He had fuzzy vision for about an hour after taking the tablet, also the foulest taste all the time and a bit constipated. He found it easier to take his meds and lay down for about an hour. I say laid down, he hasn't been able to lay down for over a year. He doesn't sleep.if this had worked he wouldn't be on this chemo. It's pretty intense. He's lost his hair now as well, but he doesn't care.