Ros1 mutation,stage 4 lung cancer, Non smoker

I’m so sorry for what you are going through. But I’m a little confused about your pain. Did you have surgery or other intervention like chemo or radiation for your cancer and the pain is residual ?

My pain started after the thoracoscopy. It was supposed to go away 4-6 weeks after the surgery but eight months later still there.

I had a left lower lobectomy 7 mos ago and still have rib and diaphragm pain. Amazingly 20mg of prednisone made the pain disappear. But as I weaned off the drug the pain returned.

I’ll ask my oncologist at next appointment. I read somewhere else too that prednisone might help. Thank!

Hi @velmaforever, welcome to Mayo Connect. Sorry to hear of your on going pain, and the stage IV diagnosis.
I take a similar targeted therapy, for an ALK mutation. I was able to avoid surgery.
How are you tolerating the Xalkori? Has it kept the cancer away?

Hi! I started with Rozlytrek but my toxicity level went through the rough. So I was switched to Xalkori. I started with 3 pills per day that gave me a lot of brain fog. Now I’m taking 2 pills , it’s been better, still not able to enjoy lot of foods, taste buds changed a lot( bitter,sour, metallic) neuropathy issues (sunburn, burning inside and outside of mouth) but cancer has stabilized. Anyone else having these issues

Hi, I've been on Xalkori since March 2023. Yes I have the constant metallic taste, a little bit brain fog that improves over time. When I was diagnosed I had a left pleural effusion; that was extremely painful. I still have a little discomfort there since taking Xalkori, but nothing close to what it was before. I also have stage 4 Ros 1 nsclc.

Hi!I had right pleural effusion after the thoracoscopy. My pain is still there, my lungs been clear from last four months , there is no pleural effusion. It’s better in the morning and gets worse as the day goes on. Anyone has any advice

Hmmm maybe I’m confused about what a Thoracoscopy is. Was that an incision between ribs ?

Yes