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Jakaba

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Stage3 NSCLC ROS1

The “fun” started as a misdiagnosis cough in 2019. Fast forward to Sept of 2021 and the cough came back. Worked hard to get a biopsy and sure enough, lung cancer.

I went in for surgery and they found it spread to lymph nodes in the center of my chest. They then had to stop, button me back up and start treatment. After a month of radiation and 3 rounds of chemo it looks like the cancer is retreating. At least enough to go back in for surgery. Looks like I’ll have to lose my entire right lung at the end of January. Any pointers on living with one lung would be greatly appreciated.

ThankS

 

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Jakaba,

Welcome here and happy New Year!

I had my entire right lung removed in 2004. Like you, I had pre-surgical chemo-radiation to shrink my tumor enough to allow a clear margin resection.

Pointers on living with one lung? I've done it for nearly 18 years and I can't run very far but otherwise my life is near normal. Here is something I share with newly diagnosed. Lou's put together some surgical tips and tricks that are valuable advise. My most important piece of information is that if I can live, so can you!

Stay the course.

Tom

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Hello there,

As you can see from my footer, my mutation was also ROS1.  Very rare one, indeed.  When I joined this forum 4 years ago, they didn't have anyone with ROS1, so just in case you need some online reading on it that's not 10 years old - The ROS1ders 

How fit you are now will determine how you will recover after the pneumonectomy - that was what my thoracic surgeon said.  he also said "with one lung, you'll be able to live a normal life, but you won't be able to run a marathon".  I started with the targeted therapy pre-surgery and luckily didn't have any debilitating side effect, so even though I was in my peak physical shape, I worked out like working out was going out of fashion (you don't need to be that crazy 🤣) Anyway, I went back to working out 10 weeks after the surgery (cuz the surgeon said I need to wait 10 weeks) and went back to running 5? (fuzzy memory) months after the surgery ("running" at that time looked more like I was 100 years old).  I did 5.5 weeks of radiation a month after the surgery but went to work every day and drove myself to the treatment on my way home.  Not even once did any of my coworkers (who didn't know of my diagnosis) suspect anything was different with me and my gym people thought I just took 10 weeks off (I used to teach yoga and HIIT-high intensity interval training).  3.5 years after the surgery, I'm aware I have one lung, but I don't let that stop me from doing whatever... 

I'm not going to say the recovery was easy - right after I came home from hospital, walking to my mailbox (subdivisions', so it's good 50-60 feet from my front door) was the hardest physical thing I did at that point in my life.  Thought I was climbing Mt Everest.  But I'm going to shamelessly copy Tom's words (modify a bit) and say "if we can do it, so can you!"

MB

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