Mucinous adenocarcinoma: Anyone treated with Tabrecta (capmatinib)?

@joycegray1940, maybe I can help a bit with the terms. GGOs, or ground glass opacities, are regions of light-colored patches that show up on a CT scan. Multiple conditions can cause them, including pneumonia, Covid, lung cancer, and others. In your case, they are known to be a radiological artifact of mucinous lung cancer.

The lobulated lesion is a nodule that looks like it has lobes. It's small and has grown about 30% in 3 years. That's really slow. I've had nodules (or nodes or lesions) that grew by 50% in 3 months and turned out to be benign. Your doctor will stay aware of them and see what they look like after your next CT scan.

Medicine is all about balancing risks. What's the risk if you stop taking Tabrecta vs. what's the risk if you don't stop? You can always ask your doctor why he or she is making their decision. Some people don't want the details, so you have to ask if you want to hear them. And you can ask how long he wants you to be on Tabrecta. He may plan to have you on it for a while and see if your lungs clear up a bit. Write down your questions when you think of them. It's the only way to remember when you're talking with your doctor. And do you have someone to go with you? I'm still in my 60s and I have my wife come with me. Sometimes, she remembers things the doctor told me that I don't.

I hope these comments help you a bit.

Thanks for the info on ground glass, I wasn't sure what it meant. My husband had lung cancer & it was removed but on his last CT scan they said he had ground glass too, maybe from COVID. I have started using the compression air boots & it seems to help my swelling. My dr. doesn't want me off of the Tabrecta. About six months ago (on my CT scan) my cancer had shrunk so I'm sure it is working, it's just the side effects. My Oncologist does not explain things very well. Sometimes I don't want the details but on the other hand I do. When I first started the Tabrecta I asked how long I would be on it & he said as long as I live. That really depressed me. Thanks again for the info. & my prayers are with you & all cancer patients.

@joycegray1940, as long as you live? Sounds like your oncologist doesn't have much of a bedside manner. At least mine said, "Until the side effects become unbearable." which is a little better. I'm on Targrisso, so I have the potential for heart damage.

I also have leg swelling, by the way. In my case, it's because of poor circulation in my lower legs that has been there for 30 years. In 2016, I had multiple blood clots and pulmonary embolisms in both lungs. 24 blood tests later, that Hemotologist said he didn't know why that happened. I wear 20-30 mm/Hg compression socks almost every day, and they help. Plus, they look quite sexy with my shorts! lol

Lung cancer research is evolving quickly, so hopefully, they'll come up with cures for both of our types before our current medication has to stop. You'll be in our prayers.