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Hello. I am new to the forum. My dad was diagnosed with stage IV NSCLC adenocarcinoma METex14 skipping mutation in February 2022.

It started with severe left scapula pain late 2021. He thought it was an injury. I took him to the ER in February due to hoarseness and O2 sats 84% with exertion. He was found to have extensive PEs and malignant pleural effusion. He had 900 mL drained from the left pleural space. Repeat CT after draining showed the cancer in the scapula and possibly the lung. More CT scans showed extensive mets to the bone, especially hips. 

Genetic testing showed METex14 skipping mutation. He has been started on Tabrecta 400 mg twice daily. He is currently taking a break from that as he has bilateral hip surgery (nailing) for stabilization scheduled this week. He has been stuck in a wheelchair since getting out of the hospital.

We found out Friday that he has mets to the brain. They said they are small (less than 4 mm). He should start brain radiation soon also. I’m very nervous about all of this. 

He is (was) a farmer and was feeding his cows on the tractor the day before going to the hospital. He isn’t married and I’m an only child (adopted). Like many of you, I can’t imagine my life without my best friend.

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Chelsea,

I'm very sorry to learn of your dad's diagnosis. I do hope the Tabrecta takes hold; precision radiation like GammaKnife should take care of his brain mets. You might inquire about a drug many use during bone met treatment--Zometa.  Many in our community use it to help rebuild bone density during and after treatment.

Please let us know how your dad's treatment is progressing. Hopefully, he'll be back tending to the farm soon.

Stay the course.

Tom

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Tom, 

Thank you for your kind words. I’m so hopeful for the Tabrecta. Minimal side effects so far. Still waiting to hear back about the brain mets. It seems everything moves so slow. 
 

His oncologist mentioned starting Zometa or a similar drug 4 weeks after his hip surgery. I believe that’s what I took him to get dental clearance for. 
 

My 10 yo daughter and I have moved in with him temporarily, and I plan to do everything I can to help him. He is a very strong man and has been healthy until now.

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Welcome Chelsea 💕 you’ve come to a great forum with support and advice. Everyone here is very nice and supportive. Please keep us updated on your father’s treatment. 🙏🏾 

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Thank you! I got a call this morning that he won’t meet with the radiation oncologist about his brain mets until next Wednesday. That seems like too long to wait. They want to wait until after his hip surgery to start. I think I’ve aged 5 years in the last month. I can’t imagine how he feels. 

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Welcome chelsea goodluck to all of you with the treatment please stay strong I know it's very difficult and worrying times, try not to worry about the brain mets treatment I also had to wait nearly a month before I got the gamma knife radiosurgery for mine done last Thursday and I'm doing quite well now apart from catching covid all the best 

Take care Justin x 

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Justin, I’m sorry you’re dealing with COVID. I hope it’s a mild case. That can be very scary, too.

I had never heard of the gamma knife radio surgery. His oncologist made it sound like they would be doing whole brain external radiation. After Tom mentioned gamma knife, I’ve been reading about that and it sounds that is probably the better choice. There are just so many decisions. 
I’ve read so many of the posts on this forum and it’s comforting just to not feel so alone. I’ve been reading the encouraging ones to him. 
Thanks for the support, Chelsea 

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It's a pleasure chelsea if you can get any comfort from the messages that's brilliant, I did struggle for a few weeks of severe depression but think I'm definitely getting stronger now with a will to fight for my family and myself, I know it's hard but you can and will all beat this 

Take care Justin x 

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Update on my dad. He had bilateral intramedullary nailing to his hips (to hopefully prevent fractures) on Thursday. The surgery went well. He came home Saturday (yesterday). He walked 315 feet today at one time with a walker! I’m so proud of him! He will start back on Tabrecta in a few days. He also has an appointment Wednesday to discuss radiation for the brain mets. I’m pretty nervous about possible radiation side effects. 

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Chelsea, 

The wait is agonizing, sometimes. If it helps ease some of your worry, my doctors first spotted my brain met in January. For a number of reasons, I didn't have gamma knife until about a week ago, the end of March. 

I'm glad you are able to be with him right now. He sounds like he has a strong spirit, and so do you. 

Karen

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Hi Chelsea,

I have stage IV NSCLC with brain mets. I had 3 larger tumors and 21 smaller ones (the size of a grain of sand). Imagine my shock since I don't have any symptoms of brain tumors (all still too small I guess). Anyway, they did targeted therapy over 5 days. They could have gotten all of them in the first 2 days, but one tumor is on my brain stem and they broke the treatment into fractions (5) since that's a delicate area. I had headache and fatigue after the procedure and for a few days after it completed. They decided against the whole brain radiation because there are side effects - loss of hair (temp or perm) and memory issues. I agree, having brain tumors of any kind is very scary. The doctor's confidence in the radiation treatment, and what they felt would be the most likely outcome for me, really helped me to be much more comfortable with the procedure. Especially now that I'm on the other side I'm very relieved that I had that treatment done. The whole idea of treating the brain tumors is to protect the brain. The treatment is to stop tumor growth and the problems that come with it. Good luck with your Dad! He's not alone on the journey.

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DM1102,

Wow, you have so much happening in your brain. If you'd like to chat about your situation, you could copy this and make it an independent post. 

Karen 

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He is set to start radiation on Monday. They did decide to do the entire brain. I asked about gamma knife and he said they can’t because there are many. I’m not sure if that’s correct. 
They have had him on high dose steroids. They are making him miserable. He hasn’t slept in a week. (Me either since I’m caring for him). He started hallucinating. Overall, just miserable and trying to recover from the hip surgeries is going slowly. His legs are swollen and he’s in a lot of pain. 
I think he is struggling with depression. I’m hoping that improves some when he’s able to stop the steroids, but I can’t even begin to imagine what he is going through. He won’t speak to someone about it. At least not yet. 

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Hi Chelsea

I'm sure that's correct about the whole brain treatment if there are to many lesions, but it is just as effective as gamma knife, the depression will no doubt be a bit of everything that is happening plus the high dose of steroids which unfortunately he needs to combat the swelling the side effects of my steroids did exactly the same to me it was a hard 3 weeks but I do feel a lot better now they have been reduced to just 1 tablet per day, I was afraid to cut them down incase I lost the feeling in my right side again but it seems alright at the moment so maybe the gamma knife has worked to stop the swelling aswell, I also didn't sleep well at all and am still struggling a bit now and do have some bad dreams, I did talk to my cancer nurses about everything but mainly I spoke to my family about everything I was feeling I know it was cruel on them but they are who got me through that stage hopefully he will open up to you, I know this is a very difficult time but you will all get through this and it will get better please stay positive and strong 

Take care Justin x 

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