Mucinous adenocarcinoma: Anyone treated with Tabrecta (capmatinib)?

Where is the swelling g? Are you on steroids with this? If yes, long term patients develop a 'moon face' which goes away when steroids are discontinued.

If this is in the arms or legs, report this to your oncologist immediately.

Hi @joycegray1940, Welcome to Mayo Connect. I see that you've found a few others that have taken Tabrecta in other discussions. This member is also taking Tabrecta, and I'm not sure you've run into them; @thieschafer.
I take a different lung cancer inhibitor. It's not uncommon to try a reduced dose if side effects are unmanageable. Has your doctor commented on the swelling?

Not on steroids. The Dr. knows I am swelling in the feet, legs, arms & legs. He said to stay on the Tabrecta, doesn't seem concerned. He won't reduce my medicine, said I might have to go on oxygen if I quit the Tabrecta.

My Dr. doesn't seem concerned about my swelling & said he can't reduce the dosage. I asked if I could go off the Tabrecta for a while & he said yes if I want to go on oxygen.

Hi Joyce, I had a stage 1 mucinous adenocarcinoma removed via a lobectomy of my left lower lobe 14 months ago. Could I inquire about your tumor? I ask only to have perspective of your experience. Feel free to tell me to pound sand 😁

I saw in my paper work that I had a stage 3, but the Dr. said it was mucinous adenocarcinoma & had it about 2 to 6 years without symptoms. He said it looked like pneumonia on x-ray & I have been treated for bronchitis several times & once for pneumonia. I have asthma too for about 40 years. The Dr. said it was rare & he has put me on Tabrecta a type of chemo pills, which has a lot of side effects. He also said this type has much less risk of distant spread but much higher risk of field cancerization with new area's of lung showing up not by metastasis but by a new strikes of lightening due to the underlying mechanism that started the first issue. This is all so confusing to me. I don't think I am a candidate for a lobectomy because I am 80 yrs. old & I think the Drs have given up on me. Are you doing well after your surgery? Are you on any type of medication? I wish you well & God bless. Thanks for responding to me.

Stage 3 lung cancer can be mean many different things, like a very large tumor or a smaller tumor that has invaded the rib cage.... or?

Just for some perspective, I was diagnosed with a 10 cm (4 inches across) mucinous adenocarcinoma in 2000 when I was 46. I had that removed with surgery which was very hard even though I was young and strong. Then I had a new tumor about 2cm (about 1 inch) develop in 2021. Again it was the mucinous adenocarcinoma. At age 67, I was not up for surgery again. I was sent to a radiation oncologist who used SBRT (highly focused radiation beam) to zap it. It took three treatments, an hour each treatment. Easy compared to surgery. That tumor is completely gone.

Then in 2024 I had yet another small tumor pop up. Again I had it zapped with SBRT (3 days, 3 one hour treatments). And now we wait to see if it goes away too.

I am 70 years old. My heart is not so good so I could never survive lung surgery now. So if mine comes back again, I will ask for more SBRT because it is easy as going to the dentist.
If I can't do SBRT because the radiation oncologist says the tumor is in a tricky spot, then I would have to opt for chemo or no treatment. But my mucinous adenocarcinoma has shown itself to be sluggish and slow growing so then it might be that I could peacefully co-exist with it until my heart fails or a pass from another co-morbidity.

So I guess I am wondering why the SBRT radiation isn't a treatment option for you. Have you spoken with a radiation oncologist?

I have never heard of the SBRT radiation treatment. I just had another CT scan today 7-29-2024 & I will ask if I am a candidate for this. I also have a pre-existing ground-glass opacities within the lingula. This now measured 5.7 cm verses 5.1 cm previously. The Dr. said there is mild interval growth of a lobulated lesion of the left lung apex measuring 11mm verses 7-8mm in 2021. I don't understand all of this medical jargon. I have no idea what ground glass is.

@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.

It sounds like you have a 2-3 inch tumor in the lower part of your left lung (lingula) close to, or behind, your heart. So it might be difficult to treat with SBRT since it is larger and close to the heart.
Like Matthew K mentioned above, your tumor is slow growing compared to most other lung cancers. If you can possible tolerate the Tabrecta side effects then it would be hopeful that it may shrink or slow the growth of the tumor the tumor more.

I like to plan an appointment with my family doctor/ primary care doctor/ for the week after the oncologist visit. My family doctor can call up all the scans and reports from his office computer when I visit him. He has more time to answer my questions. We look at my scans together so I can see what the oncologist was talking about. Plus my family doc is really good explaining things.

My family doctor is excellent source of other treatments that might help my daily life, like ordering physical therapy for breathing improvement. He might have some ideas for physical therapy to make the side effects of the Trabecta more tolerable. Maybe there is a massage type physical therapy to help with the swelling?

If you are having trouble sleeping or you get sad at night, he can prescribe xanex type pills to help you sleep and forget about the crummy diagnosis for awhile.

My family doctor ordered a sleep study for me to check my oxygen levels at night when I sleep. I don't snore, so I didn't need a cpap, but they found out my oxygen levels were dropping because my breathing slowed down. So now I use a large oxygen concentrator at night so my oxygen levels stay normal when I sleep. He also ordered a small portable oxygen concentrator. I strap it on around my waist in a fanny pack (it weighs a couple pounds) and it gives me the extra strength to go shopping or for a walk around the neighborhood. Think about what you need for help and just ask. All he can do is say no, but I find most often his office does all they can to help me.